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Friday, March 7, 2014

I spoke with pre-registration for Haven's surgery today. We are ready to go! First I have to say I don't remember paying $100 for every surgery before……anyway

Haven is ready for surgery. She has been informed that she cannot have anything to eat after midnight and nothing to drink after 7:15am. She has to be at the hospital by 8:45am to meet with anesthesia and her surgeon.

They have it on her paperwork that she is allergic to Ketamine and no clear tape is to be used due to making her skin blister.

Her surgery will begin around 10:20 am. Her surgery is normally around 1 hour. But they told me today that with her high risks of anesthesia and respiratory issues and going through surgery in general she will probably be around 2 to 2 1/2 hours.

She will be immediately admitted to the PICU following surgery. We are to bring her c-pap mask and they will make sure she is hooked up on the machine with her oxygen. I did explain to them that one of my biggest concerns is the fact that her throat is going to be cut up and she is going to have a mask forcing air in to her throat. I don't want her gagging on blood. Again this is one of the reasons she will be in the PICU. They will monitor everything.

We aren't sure when she will be coming home yet - it depends on how well she does with the mask and being able to drink fluids. She doesn't have an immune system so she will take twice as long to recover than a normal person. Heck, it takes her 30 days to recover from a mosquito bite! But we have grandma here to take care of Miss Haven and be with her at the hospital. So she will be taken care of completely.

I will update everyone on Monday as we finish surgery and settle into recovery. Thank you to all of you who have been sending your prayers to Haven. She does check her blog and you can leave your comments for her to read.

Thursday, March 6, 2014

Below is a short story about Haven's life after being diagnosed with cancer and a rare syndrome called ROHHAD.

When I was 2 I was a normal healthy girl. I liked to help my dad work on mountain bikes.

Then in one month I gained 25 pounds and my mom took me to the doctor to get an MRI. Which is a picture of my insides. They took a picture of my brain. Which was fine.

After a few more months I gained more weight and they did another MRI.

The only place they could get a needle in me was my ankle.

Finally my 3rd birthday and I got a Chinchilla.

After my 3rd birthday my mom and dad noticed my eye turned out. Once again I was sent to MRI but they didn't find anything. Then my mom decided we were going to move to Maryland because the doctors in California were taking too long.

About 15 days after moving to Maryland I had a 45 minute seizure. I was sent to Johns Hopkins hospital by ambulance. They did a lot of tests to find out what was wrong with me.

This was me giving myself gas so I could do another MRI. This time they were going to check my entire body instead of just my head.

Here I am relaxing after the MRI.

During Christmas break in 2007 mom and dad received a phone call from my Endocrine doctor at Johns Hopkins dying I had Neuroblastoma Cancer and ROHHAD Syndrome.

Mom convinced the doctors to let me have my 4th birthday before I had surgery to remove the tumor that was in my stomach.

Here I am walking in to surgery with my dad.

I spent about a week in the PICU. Which is an intensive care unit for children.

I had to breathe in to this multiple times a day to try to clear my lungs.

This is an x-ray showing my new port in my chest and of course my spine and ribs.

This was me about 2 1/2 weeks after surgery and finally at home

I have a high heart rate so I have to meet with a special heart doctor. Sometimes I have to wear a heart monitor.

These are the probes that monitor my heart.

This is a special bone age scan. It helps the growth doctors judge if you are growing at the right speed. My syndrome stops the growing.

When I was first diagnosed I had to take a lot of medicine twice a day. This was my normal morning medicine and then I would take the same thing at night. The red was my blood pressure medication. I don't have to take these anymore.

Another surgery. This one was to fix my eyes.

Here I am walking in to eye surgery with my dad.

My mom had a cold and because I don't have an immune system to fight infection she had to wear a mask to see me. I couldn't have my eyes open so she had to feed me.

Here I am getting chemo. This was one of my favorite nurses, Katie.

Here are the clowns. They love to come around when you are getting chemo to cheer you up.

Well it's time for a couple more surgeries - except this time I won't be going home. I had to live in the hospital for 6 months after this. I had to have a lot of chemo.

Here I am in recovery….my mom bought me a stuffed animal schnauzer.

I couldn't walk for a while. They had to remove my toe nails because the chemo kept making them infected.

I like to sleep walk so they would be me in a bed that could zip close at night.

Hanging out at the hospital for 6 months is not fun.

This was my favorite nurse. She was my night nurse - her name was Patel. She was with me for the entire 6 months.

When we were finally able to leave the hospital they let us out for the day. We got to go on a boat ride around the harbor.

When I finally made it home I had received so many get well cards from around the world because my mom had started this blog. She put the cards up all over the house for me to see when I walked in the door.

We had to be trained at home to flush my 2nd port. I am really allergic to tape so this was a very bad port for me and we had to remove it after 3 weeks.

I started Kindergarten while doing chemo. I had to do it through homeschool. I did most of it at the hospital. They had teachers come to the house to be with me.

When I was released from the hospital my mom and dad said I could have a dog. I wanted a baby schnauzer. I picked out my dog - Deezy.

A few months after I got out of the hospital Make-A-Wish contacted my mom and gave me a HUGE wish. I chose to go to Disney World in Florida. We went for a week and had so much fun. These were my wish granters.

Then in 2010 we were contacted by the Oprah Winfrey network to do a TV show called Mystery Diagnosis. We had TV cameras follow us around for 3 days. We filmed at our house, the hospital, and at a studio. I was interviewed at the studio.

After doing the TV show we were contacted by the local radio station to do an interview the hospital radiothon.

I got to meet Jojo and Reagon of Mix 106.5 and we did a full radio interview at the studio. It was a lot of fun and we got to share my story and information about my syndrome and cancer.

I began doing physical therapy to help my muscles and bones get stronger. Sitting in a hospital for months at a time can make you weak.

Here I am getting my normal blood labs. I have these done every 4 weeks.

In 2011 we moved from Maryland to Utah. My mom and dad really wanted to live in St. George. We would come up to SLC to Primary Childrens for my check ups.

So for two years I have gotten my labs done every 4 weeks and I get chemo every 8 weeks.

This past year my mom decided it was time to get another sleep study done. So on December 21 we went to Primary and had a complete study done. It takes about an hour to get all the wires on.

This is the computer screen when sleeping.

On my birthday I had to get my chemo. So we went up to McKay Dee for the day. This is my favorite nurse Danielle. We celebrated my birthday together.

I really like this hospital. I love that they have a bed for me to relax in.

In February (a few weeks ago) I ended up at the hospital feeling sick. They did a chest x-ray.

As you can see this one shows that I had pneumonia.

They admitted me to the hospital for a week. This doctor was doing an EKG on my heart.

Here we had to go down to get an Echo done on my heart.

While in the hospital I was able to get my chemo and get healthy. I had to stay on oxygen while sleeping.

While at Primary I was interviewed for the radiothon again for the hospital.

When we got home that evening my reparatory therapist came over to show me how to use my new machines at home.

Now I sleep with oxygen (blue thing), a pulse ox machine (to watch my oxygen), and a c-pap (to help me breathe)

We went back in to my doctor to get fitted for another mask…..I probably tried on 30 masks that day!

Even though I have to be in hospitals a lot and this is the first time I've been able to be at a school I have a lot of fun with my time at home. I love to hang out with my brother and sister. We like to go out and do fun things. They like to drive me crazy too.

I will be having surgery on Monday. Because I still do not have an immune system it will take me a little longer to heal than normal. I can't wait to get back to school and see everyone.